Patient and public involvement in research

It’s a trip!

How do we persuade researchers to do involvement? I think involving patients in research is a bit like being on a roller-coaster – no, not because of its ups and downs – but because you’ve got to experience it for yourself to really know what it’s like.

In the same way that patients provide insights based on their direct experience of a health condition, I think understanding the difference patient involvement makes to research is a form of experiential knowledge. You’ve got to do it – to get it.

Until you’ve sat and talked with a patient and had that lightbulb moment – that reality check which makes you realise ‘You know what – I’ve been thinking about this all wrong’ – until you’ve had that experience, you may not get what involvement means – no matter how much information you’ve been given about it. Researchers who’ve had this experience tend to be the enthusiasts!

So with the roller-coaster… you could know every measurable fact about it, the speed of the ride, the length of track etc. You could know everything about the impact – the changes in cortisol levels, and the endorphin rush – but none of this tells you what it’s like to be on it, or why some people want to do it again and again…

What persuades people to go on a roller-coaster? Watching from the side, hearing someone else rave about it, having someone else go with them on their first ride? What then are the lessons for encouraging researchers to do involvement? Maybe it isn’t about giving them more ‘robust evidence’. Maybe it’s about giving them the bottle to give it a go…